Sitting in a local bar a few months ago, I was chatting to a lovely family friend. You know the type that you don’t see that often. The conversation turned to Gabe.
How is he doing?
Grand, grand, I replied. Doing great. Standard response when out and about.
There was a pause so I knew it was coming. The Question.
I keep meaning to ask. What exactly is wrong with him?
You see we don’t know what is ‘wrong’ with Gabe. It takes a while to explain things. And on a night out it is long-winded and terrible things might happen like the bar will shut before we get to the end of the story, or my family friend might be bored into a coma.
He has global development delay. I replied smiling. Because it is a fair enough question and a well meaning one.
Oh that is a relief. I thought it was something serious.
Global development delay, or GDD to its mates, sounds like a friendly soul. But you have to watch your back as this catch-all statement, that appears on the top of many a medical letter across the country, is not as cordial as it seems. I know it has a trusty ‘I do what I say on the tin’ feel to it. It describes a delay in development, but it doesn’t scream a life-long problem. In fact it whispers hope – because a delay by definition offers a promise of catching up. Right?
Erm… not quite.
With no diagnosis, this is the only clinical description available to us that sums up the bulk of Gabriel’s ongoing medical issues. But to the man on the street (or the mate in the bar) it doesn’t describe much of anything at all.
The American Academy of Neurology and Child Neurology Society guideline say it is:
a subset of developmental disabilities defined as significant delay in two or more of the following developmental domains: gross/fine motor, speech/language, cognition, social/personal, and activities of daily living. Those deficits are evident in comparison with the skills attainment of chronological peers.”
Let me tell you some things about our experience of good old GDD.
Will my child with global development delay catch up?
This is probably the first thing that everyone googles when a doctor starts wafting around the phrase. The good news is that some children do just catch up with no permanent problems. When Gabe was younger I heard many a wonderful tale and it made my heart soar and it helped me through those early uncertain days. Hope is an amazing thing. Hold it tight in both hands. Then there are the other children who catch up with some help from a physiotherapist, occupational therapist or a speech and language therapist. With good programmes and lots of blood, sweat and tears progress can be made. You will probably have a love/hate relationship with therapy, and it can take a while to find the right one.
Some children, however, won’t catch up. Not ever. They might make significant strides with therapy to achieve their full potential, but there is no happy ever after and skipping off into the mainstream sunset. After nearly five years, we have accepted that our child falls into this camp.
Brace yourself for the testing
This is the tough bit I’m afraid. You might have an initial development assessment with lots of different therapists over a period of weeks. This will rule in or out possible autism or a language disorder. After this, in many cases, the doctors are going to want to start running some tests. I’d tell you to stay away from old misery guts Dr Google who loves the negative stories best, but I know that you won’t. The conditions will scare you to death. I barely survived this bit with my sanity intact, but I did survive. As did a lot of my friends. And more importantly our children are thriving still. Tests to expect are hearing and vision tests, thyroid function, screening for inborn errors of metabolism, EEG if suspected epilepsy, MRI brain scans, and genetic screening. A useful flow chart is available here.
Let your friends know it’s all a bit sh*t
During this testing period you are going to have to let people in. It’s an emotional roller coaster and you’ll need as many people as possible weighing that cart down so it doesn’t fly off the rails when you do another loop the loop. Plus when the dust settles (it does!) you’ll want your friends back. They are not always going to get it right, but I bet you they will try. And sometimes (gasp!) they will have their own stuff to deal with. Wise blogger Renata from Just Bring the Chocolate said something that really resonated recently. “Forgive your family, your friends and the people you meet at different points in your life for not being perfect. We all make mistakes, none of us want to be defined by them. Remember instead all the times they got it right and judge them on those terms.” Easier said than done, I know. But I wouldn’t want people to cut me off for one mistake. I am worth more than that. And so too is your gang. By the same token you are not going to have the time or the energy for dead wood.
Birthdays are going to be tough
Remember all those things you looked forward to when you were pregnant. The birthdays were right up there weren’t they along with Christmas. The cake, the party, the presents, making it so amazing that they remember it forever. Well yeah, that one might not go exactly according to plan with GDD in your life. Birthdays are landmarks, lines in the sand, and a big fat hurrah your baby is one year older. When your child has a delay, the birthday serves to remind you that the gap between them and their peer group has just got larger. It’s a bittersweet moment. I was a mess for Gabriel’s first two birthdays – it just felt so sad and unfair. They have got easier though and when he turns five in two weeks, we will quietly celebrate this milestone and how far he has come. But I won’t lie, as he opens yet another baby toy instead of a bike, a kite or a scooter, a bit of my soul will curl up and die. At the risk of sounding like a party pooper big time, I am always a bit glad when it is out of the way for another year.
Recognise that ongoing happiness is as fragile as a house of cards
You can be the most positive person in the world. An eternal optimist. Someone who only sees the flowers and refuses to focus on the dog poo. Good for you. But if your child has GDD, no matter the severity, know that at some point something will knock you down and that is okay. This is a fragile sort of life and most of us are just feeling our way in the dark. I find it is the strangest things that get to me. I will be happy going about my business and then wham, he wakes four times in the night with a cough and I am back at the place fearing life-limiting diseases. He can spend an afternoon being a cranky monkey and bursting my ear drums with constant shouting, and I’m as fed up as I ever was. Life ahead – the communication frustrations, likely emotional and behavioural issues – looks bleak. Of course, some of you are dealing with ongoing crisis so are picking up that house of cards more times than most.
I can sense life coming to slap me in the face now, so I either side step and distract myself. Or sometimes I take the hit and have an indignant wallow for a bit, making sure to avoid people likely to make me want to punch a wall. You know what I am often better off for it really. It makes me that much more appreciative when things are uncomplicated and mundane.
Just meet them where they are at and everything will be okay (I promise)
Life will settle back down if you let it. I think you can make a choice. You can either embrace this new world, lay down some roots, make new friends in it and let life chug back on. You have my permission to be a bit selfish – do all the things you used to love whenever and where ever you can. Or you can chase an unobtainable dream and let it grind you down and spit you back out. Be kind to yourself. Day-to-day, GDD is not all bad. In fact, you will largely forget it is part of your life. Yes, you will linger long (and longer) again in each stage. You will envy friends’ children who seem to be flying through. But having had two older ones do this, I know that each stage no matter how long you are in it has its pros and cons. At four years old, Gabe is more like a 12-month old, and mostly we’ll just crack on and do all the things that a 12-month old likes to do. I love that he gets excited by ducks in the park and sometimes falls asleep in the nook of my arm on a windy Sunday (so I have to watch a Rom Com movie until he wakes, while the husband cooks dinner). I obviously don’t love so much the nappies or the night-time awakenings (I mean who does!). If you take the pressure off them and yourself, watching them unfold at their own pace can be a magical thing. Made all the more wonderful as it is harder won.
I have to say, hand on heart, that some of my most favourite moments in my life lived thus far have come from the simple gifts that Gabriel brings me. As the saying says: everybody wants happiness, nobody wants pain, but you can’t have a rainbow without a little rain.*
* There is another thing you don’t know. You will now collect cheesy inspirational sayings where you once collected shoes or football stickers. It happens to us all no matter how cool and trendy we used (to pretend) to be.